You know you’re sick when…although you are a self-proclaimed Jewish atheist, a good friend presents you with an enameled silver and turquoise Virgin Mary charm. It is a Miraculous Medal, she explains, representing Mary’s power to heal those who believe.
You know you’re sick when…you whip that thing around your neck in two seconds flat.
With all the hopes and fears and magical thinking it represents, Miracle Mary is my badge of illness. I am an official Sick Person. As of today, February 26, 2012, I take 10 prescription medications and stock a battery of over-the-counter creams, gels, baths, and drops to cope with their side effects. If I can stop clawing my skin off for just a second here — that’s the Telaprevir — I will tell you how this happened.
Back in December, when I last wrote about my hepatitis, I was desperately trying to get accepted into a trial of one of the new drugs, which work faster and better than the approved ones. But my disease had progressed too far — people like me could have a negative impact on study results. There must be a way around this, I thought. For some patients, I was told, running stairs right before the blood draw had boosted a key cell count, so I did this Rocky Balboa routine as if my life depended on it, in the middle of the atrium at Hopkins Outpatient Center.
After it didn’t work on three different occasions, I finally got it: There was no choice but to start the standard treatment.
On January 5, I spent a couple of hours getting trained in the regimen I’d be following in the year ahead. Syringes, bio-hazard disposal cans, pill sorters, and electronic alarms were involved. Every eight hours, I would have to eat 20 grams of fat — this upset me as much as anything else, as I imagined myself ballooning like a force-fed duck on its way to becoming foie gras. But if you didn’t eat the fat, I was warned, the medicine couldn’t be absorbed and you would get something known as “burning butt” or “poop of fire.”
There was a huge stack of printed materials from the drug manufacturers to inform me about potential side effects. As I shoved them back into the box, a treatise titled “Dealing with Itching” caught my eye. How much could there be to say? Meanwhile, the doctor explained that many of the side effects were cumulative, particularly depression, which set in for roughly half the patients. With whom did I live? she asked. This person might have to be the arbiter of whether I needed antidepressants, whether I was becoming progressively crankier.
Well, I wasn’t sure. Should a person’s 11-year-old daughter really be in charge of this decision?
That afternoon I gave myself my first Interferon shot, took my first handful of pills, ate my first avocado, cream cheese and smoked salmon bagel. It wasn’t that bad. I was low on energy, headachey, a little feverish, but I’d been sub-par for a year already, so it was no big shock.
A couple days later, Jane came home with news of an epidemic of head lice in her class — of course, raking her nails through her hair as she spoke.
I blanched, knowing full well what an anti-lice campaign involved — like 10 times as much energy as I had. A few minutes later, when I asked her to put in her retainer, she said it might be in her lunchbox, and her lunchbox might be…in Ms. Lewis’s classroom?
“Look!” she said accusingly, surveying my crumbling face, “it’s happening already! You better call and get those pills.”
Nah, I was fine. I made it through an already-scheduled work trip to Pittsburgh and a weekend visit to Austin. I baked scones for friends from Philly in town for a squash tournament. Then something exciting happened.
Bloodwork taken two weeks after I started the drugs showed my viral load down from over three million to 43. Forty-frickin-three. This was not an unusual result, but it was a very good one. I was almost cured.
So, I thought, this is what I was so afraid of all those years? This little nothing treatment? Miracle Mary must love Jewish atheists!
Let the joyous phone calls begin!
The next afternoon, my right forearm began to feel sore. By the time I put Jane to bed, it had gotten serious. I didn’t have a moment free from agony until I gave in at 5 a.m. and called my friend Ken to take me to the emergency room.
By then, the arm was swollen and reddish areas were spreading. I was diagnosed with cellulitis — a tissue infection — and given a little morphine, a little Dilaudid, then sent home with an antibiotic called Clindamycin. How did I get this infection? My theory is reckless scratching caused by Telaprevir + dirty fingernails + depressed immune system caused by Interferon = mad, crazy bacteria having an orgy in my arm. No one else has come up with any better ideas.
The next five days were bad. My arm ended up double its normal size, bright red and burning hot. Layers of dermis had peeled off so that it looked skinned in some places, and spotted with boils in others. My son Hayes almost threw up the first time he saw it. Meanwhile, the Clindamycin was ravaging my digestive system. Soon I couldn’t swallow and had something that felt like hydrochloric acid pouring out of my ass at 10-minute intervals. I had to take four of those pills every day and I shook with terror each time.
Many dear people in my neighborhood were taking care of me — bringing me food and beverages, doing my errands, wrapping me in gauze, driving Jane around — but, as my arm continued to putrefy, all were increasingly insistent that I should go back to the hospital. “But it’s the first week of classes at UB!” I told them. “I can’t miss school! I can’t leave Jane! What about the dog?” And finally: “You are not the boss of me, Pam Stein!”
But in fact, I was not doing anything for Jane but scaring her, and was so weak I had to teach my class flat on my back from my sickbed, via Skype. Immediately following, poor abused Pam took me to the doctor and then on to Johns Hopkins Hospital. The antibiotic was not the right one after all and the infection was out of control.
After fighting so hard not to go there, I loved the hospital. The first object of my affection was my nurse Geri, a big, kind African American woman who tried to speed the process for me as I waited for phlebotomy to show up and draw the blood required before I could start medication. Soon enough, I was falling apart. “Can’t you just do it yourself?” I pleaded with the resident on the floor after about six hours. “You’re a doctor, right?” As she demurred — this was a complicated blood draw — Geri broke in and said, “I can do it.”
That is just the beginning of what she did. She discounted nothing, fixed everything, and soothed me with endearments and reassurances. After what I’d been through at home, I felt like I was at a spa. I felt like I had a mom.
At night, she was replaced by the awesome Lucky — a spiky blond with horn-rimmed glasses who had three months nursing to Geri’s decades. Eventually I found out she had been a policy analyst in Washington until the corruption drove her out of there screaming. She started nursing school at age 40.
Lucky and Geri and I were bonded not only by their care for me, but by our shared project, my extraordinary roommate, Miss Simpson.
Miss Simpson, a bone-thin African-American woman who sometimes looked like a 12-year-old boy and sometimes like a 90-year-old crone, was very, very unhappy about being in the hospital, though she was rushed in with a fever of 105° the same day as me. When anyone came to take her vitals or bring her meds, she screamed with fury. “GET AWAY FROM ME. I DON’T WANT THAT.” Our room was in an uproar around the clock, partly because she wouldn’t or couldn’t use her call button when her empty IV beeped or when she needed to go to the bathroom.
This was the beginning of our friendship. “Do you want me to call the nurse for you, Miss Simpson?” Amazingly, over the course of three days, we got to the point where I could crack jokes about her stubbornness. “I like Marion,” Miss Simpson announced one day, though she never opened the curtain between our beds. “Where’s Marion? What’s Marion having for lunch? Why didn’t I get that? I want what Marion has!!!” Lucky said it was like a darn sorority in there.
What impressed me most was the commitment to taking care of her. Miss Simpson refused a spinal tap. “DON’T GIVE ME NONE OF YOUR EXPERIMENTAL TREATMENTS, JOHN HOPKINS!” She put her foot down on a blood transfusion. “YOU AIN’T GONNA GIVE ME AIDS, JOHN HOPKINS!” (Actually, she already had AIDS, but maybe she thought I didn’t know that.) No matter how she acted, and she did a fair job of simulating demonic possession, the staff just regrouped and strategized. They brought in her long-suffering sons, her social worker, her doctor. They waited two hours and came back. They smothered her with darlings and dears. They got her well.
Though my primary view was of the Miss Simpson scenario, I was also riveted by what I could make out of the hospital at large. I watched the troops come and go, the phlebotomists from many lands, the meal carts, the laundry wagons, the night nurses and the day nurses, the white-coated doctors on rounds, their pontifications booming up and down the hall, the flocks of nursing students in navy scrubs, the wheelchairs and gurneys rolling back and forth to radiology, the nutritionists and the visitors. “Can I get an ice water for my dad, please?”
One afternoon I opened my eyes and there were two osteoporotic ladies standing next to my bed with bursting tote bags. Since I’d checked Jewish as my religion when I was admitted, these representatives had come to bring me grape juice from Israel, challah rolls, and get-well cards from the children of their temple.
“Wow,” I said. “This is great. I almost registered as atheist, but maybe now I’ll just stay Jewish.”
“You should,” they told me firmly.
On Friday night, Miss Simpson went home and weekend nurses replaced Geri and Lucky. These were sad farewells, and suddenly it was unearthly quiet. I was the last one on the island. But the truth was, my arm still looked like hell and I was happy to soak up a few more days of rest and nursing.
Before I went home on Sunday, the attending physician brought me some big news. My viral load was down to zero. In that light, it was a little easier to put up with everything else.
That was three weeks ago. My arm is largely healed but still hurts and won’t straighten completely; we’re still trying to figure out what’s up with that. My energy level has remained low, causing adjustments in my dosages and the addition of new medicines. The thrush I got from the Clindamycin hangs on. The horrible dryness and itchiness, which I will probably end up writing my own book about, should end at 12 weeks, when I stop taking Telaprevir. Then I just have 36 weeks of the other meds to go, needed to make sure no tiny, undetectable amount of virus is lurking in there, ready to reproduce and take over again. If I remain undetectable for six months after treatment, I’ll be considered cured.
What I don’t have, at least so far, is depression. Actually, I am pretty happy. Lying on my couch in my warm house with my sweet dog makes me happy. Watching “American Idol” and “Smash” with Jane every night is just my speed. My expectations of myself are so low that just teaching a class or putting on nice clothes to go to lunch seem like worthy accomplishments.
When I got back from an MRI of my arm this week, I found Miracle Mary along with my watch and other jewelry still in my pocket. As I tried to get the chain around neck, I let the end slip and the medallion went straight down the drain of the bathroom sink. Oh no! I was terrified of what losing Miracle Mary could mean.
I thought of all the people I knew who could help me with this, and couldn’t bring myself to call a single one of them. I was tired of asking for help. So — despite the fact that I had absolutely no experience or expertise — maybe I could do it myself? I wedged myself under the sink, turned off the water, unscrewed the connectors to the U-shaped pipe, lifted it out and dumped it into a pan. A child’s toothbrush, some flotsam and jetsam, and Miracle Mary tumbled out. I put her right back around my neck. I put the sink back together. It worked fine, no leaks.
And then I returned to the couch to await the next miracle.
Marion Winik writes “Bohemian Rhapsody,” a column about life, love, and the pursuit of self-awareness. Check out her heartbreakingly honest and funny essays twice a month on Baltimore Fishbowl.